Well There Go All My Plans

I could die.

I have been struggling for the past month to wrap my mind around this diagnosis and trying to come to terms with what it means. There are so many new factors in my life that are realistic possibilities now.

I might need open-heart surgery…

I had a path before me, it was so carefully constructed and I had put so much work into it to make it what it was. I’m starting PhD school this year.

I could die.

The path I had always envisioned was never easy. PhD school isn’t easy. It requires hard work and a dedication that is almost unimaginable. 40-80 hour work weeks on top of already taking classes. I would work over weekends as well.

I might need open-heart surgery…

I don’t know how to do that with Loeys-Dietz Syndrome. I don’t know how to work this into the path. With the yearly scans (if I’m lucky) or the surgeries (if I’m not lucky) everything has just become so much more complicated. I know that plans never go as expected and I know that complications will always arise, but this just seems unfair. I don’t know how to do this. I never planned for this. I am so close to achieving my dreams and just so horribly close to losing them all too.

I could die.

And it terrifies me.


6 thoughts on “Well There Go All My Plans

  1. Last year I was diagnosed with cardiomyopathy. It meant that I too could die and that for sure my life was going to be shortened. It terrified me too. I’ve been very lucky/blessed since then as my heart healed itself. I only share this because I can truly relate to getting a diagnosis that could be terminal. It is terrifying, no doubt. The good news for you is that you are finally aware of what is happening for you and that means you have some measure of control over it: you can request scans and you can take meds. The other positive thing about being super rare (I have several medical issues, some of which are super rare), is that doctors find you interesting and want to work with you. I know it still sucks and it’s still terrifying and I’m not trying to minimize that, but I find for me it helps to also remember the positives. And the truth is, any of us could die at any time. No one is guaranteed a long life. I know having it in your face is hard, but try to remember these other points as well.

    • Oh I’m so glad your heart healed itself! Rare does seem to be intriguing to some doctors. Others seem to get intimidated by it o.O

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